My Fibromyalgia Story

Hello there! I’m a disabled woman in her 40s living in suburban Toronto, Ontario. Grew up on the west coast, interior British Columbia and worked in the hotel/resort industry in my 20s. Consequently I’ve traveled western Canada and lived in some pretty neat places and in many Provinces. In the last 15 years I’ve been in Toronto with a guy I met online about 20 years ago. We’re not together anymore, as of Feb 2016.

I’ve had chronic pain the last 10 years or so, perhaps longer. I’ve *never* coped with stress very well and remember being easily angered and frustrated since being a teenager (though at the time I figured I just knew it all lol). Used to be that if something didn’t go my way I’d find a way to make things happen. “No” wasn’t an option. I’d go around it, go over it, or figure out how to do what I wanted to do. I made things work. And when things didn’t work out, or wasn’t fun where I was anymore? I simply pulled up my roots and moved out (and on). Maybe I was running away, or maybe I was perpetually frustrated with life and always seeking “more”. My point is that I was a go-getter. Not the type to sit back and let the world pass me by.

In October 2010, I began having intense chest pains at work. I thought perhaps I was having heart problems and went to see my family physician. We had all kinds of tests run, blood work, xrays, ultra sound, cat scan and I even ended up with a mammogram (concerned about that lump – but nothing showed up and everything is a-ok there). There was (and still is) a very sizable lump between my breasts on my sternum that no test can “see” but that you can feel by touch. A surgeon said it was not worth operating and that it “probably” is cartilage that is protruding as a result of Costochondritis. I believe it is a result of, not the cause of, my pain. That lump is still there and no one knows what it is or what it is from.

Diagnosis in 2010/11

Eventually I was sent to a rheumatoid arthritis specialist who had a bone scan done and recommended a few months of vitamin D pills to replenish my very low levels. He suggested that this deficiency may be causing the pain OR that I may have Fibromyalgia and likely Chronic Fatigue Syndrome. A few months later of supplemental VitD and I still have pain (of course). This man, at the time, did not feel that I should be on pain killers of any kind. Which I found ludicrous. I was astounded and shocked. The intensity of my pain at that point was unreal. In fact, at the time of that specific appointment, this rheumatoid arthritis specialist touched several of the typical FM pressure points and had me nearly *screaming* in agony. Until then, I had NO idea how much I really did hurt. I hurt, but when that man touched me in those places it was a revelation of pain. I hurt far worse than I thought I did. When he suggested that I should not need pain killers I nearly died of shock right there and then. I could not imagine NOT having something to help me with pain. And I still can’t.

P.S. Turns out that Rheumy just wanted to get me on his cortisone shots. At $60 per visit several times a week, no wonder he didn’t want me on pain killers. He’d much rather have the cash in his pockets. So beware of this if you hear similar and are recommended cortisone shots! Which, I might add, only help temporarily and not for everyone. One man I saw in the waiting room of this Rheumy quite often said he came pretty much every week for shots. He got relief for maybe 3-4 days of the week. At least he could afford it, right?

I have a diagnosis of Fibromyalgia and likely Chronic Fatigue Syndrome too. Severe Costochondritis is a major source of my daily pain. My family doctor at the time was completely on board with helping me get the pain relief I can. She has been distraught at the amount of pain I have been suffering and I simply ADORE her for her empathy and understanding. I feel blessed that she cares as much as she does and lucky that I have a doctor who is not only willing to help me manage this pain, but to educate herself more on this condition. She has recently referred me to a pain specialist after trying for months to help me manage my pain. We thought we had it.. but the respite was only about a month of “ok” coping. Then the pain has been nearly constant again.

Unfortunately, it turned out that the pain “specialist” does not believe in pain medication. I think he, like my rheumatoid arthritis doctor, prefer making more money off cortisone injections. My doctor said it was like making a declaration that an insulin dependent diabetic didn’t “need” insulin. She said it was one thing to say such a thing to patients, but making that statement (that chronic pain patients don’t “need” pain medication) to another doctor was a flat out lie to their face. Needless to say, she would never be making another referral to him.

Finding a Fibro Friendly Physician

I’m SOL now because my doctor has decided to move her practice out of Province due to the recent changes in Health Care. I’m currently waiting to find another doctor through the Ontario Health Care Connect system. I have no idea how long it will take but I’m terrified I’ll have to resort to going to the hospital for my narcotic medications. Submit myself to Emergency every time my pain is too much. IE daily. Very freaked out indeed. Walk-in clinics here do not prescribe narcotics.

Update: It has been several years and I still don’t have a family physician. The Health Care Connect system was a joke. The doctors listed on the gov’t site pages that supposedly are taking new patients either don’t work there anymore, don’t work (retired) or aren’t taking new patients. What a waste of my time that was.

I wanted to mention that many medical professionals believe there is a traumatic event or “trigger” that causes Fibromyalgia. While I’ve had plenty of trauma in my life, I just couldn’t pinpoint anything recent around the time when my symptoms became so sudden and so severe. At the time I was in a new job, with a recent promotion. I had lost nearly 60 lbs and was doing great, Life was getting good. Then I got sick, really sick. Was it the stress of all the sudden changes? Even though the changes were good? I don’t know. It still doesn’t make sense to me.

I suspect things may have started when my mom passed away in 2008. She was my very best friend and I miss her dearly, every single day.

Living with Fibromyalgia

Most days, all I want to do is crawl under my covers and sleep. I avoid life. I avoid anything stressful and I will NOT abide drama of any kind in any shape, way or form. I just cannot become invested in anything at all – good or bad. It physically hurts me. I have such a huge issue with noises that I wear earplugs 24/7. Wearing earplugs softens noise and helps me tolerate it a whole lot better. I even wear them when I’m out going to the doctor’s office or picking up medication.

I rarely go out anymore. All I want is peace and quiet. I yearn for serenity and calm. I can’t move very quickly or for long anymore. Most of my days are spent sitting in my computer chair trying to find something online to amuse or distract me. And I succeed for hours at a time on the good days. On the bad days.. well I try not to think about that too much. When I can sleep, I sleep. Or I stay up as long as I possibly can so that when I do lay down I can pass the hell out (getting to sleep when in intense pain is near impossible).

I’ve been very scared at times. I have lost my memory capacity – especially short term memory. I lose words when I’m typing or talking. This, by far, is the scariest thing to me. I’ve inhaled books since I was a kid and consider myself very articulate with a large vocabulary. But not being able to find words to express myself? It’s just awful. Like suddenly being struck “dumb”. That’s what it is like to me.

And the pain.. I worry that if I hurt this much, how on earth is it not doing damage to me in some way? IE if you broke your hand (for example) and tried typing, the pain would tell you NOT to be doing that. It HURTS when you do and that’s your body’s way to say, “Take it easy! Slow down”. But I hurt in so many places at the same time. I wonder frequently if I’m not doing myself more damage in some way when I push myself to get something done or just do it a little bit longer. It screws with my head big time. Especially since the majority of my pain is in my chest. I feel like I’ve been hit in the sternum with a sledgehammer and someone has broken all my ribs. Never mind the constant all-over body pain, it moves around and decides to flare it’s ugly vicious head at random.

Then the guilt is a real killer. Guilt that I can’t work anymore. Guilt that I can’t help to financially support myself anymore. Guilt that I have to ask for help. Guilt that my body has betrayed me and I can no longer do the things that I once could. Most days I’m kind of beyond the depression thing. I simply refuse to let this get me down. I won’t roll over and die. I accept this. But I won’t have a pity party either. Well, that’s what I tell myself. Sometimes it works.

Sure, some days are very bad. All I can do is tough them out, endure until it’s over. Not much choice in it. Maybe it seems like I’ve got my head in the sand, maybe I do. One does whatever they can to survive, to protect themselves from whatever is coming their way. I guess I’m in survival mode. I just don’t think about the future much. All I can cope with is right now, today. Worrying about the future is pointless, and painful. Just get through today. One day at a time.

Thanks for visiting. Friends and family, I love you bunches and bunches! If you are suffering with FM and CFS, I welcome you and encourage you to share your stories too. Support is the best thing for this rotten condition. Wherever you can get it. Especially from those that truly understand and comprehend how horrible this condition/disease is. Reach out to people like me. It really helps. Honest.

Update: Oct 2013

While I’m still waiting on finding a doctor that will accept chronic pain patients, I did manage to find a local walk-in clinic (with pharmacy in same building) that will prescribe my narcotics. As I’ve been on the same medications pretty much since 2011, they seem to feel that it’s ok to keep prescribing everything as-is. As my prescriptions are on file in the clinic now, whichever doctor I see will continue to write the prescriptions.

Update: August 2014

Said pharmacy will no longer prescribe opioid pain medication to me. Either I become a patient of one of their doctors (in the building) or I go without. I currently ‘manage’ my pain with way too much Aleve (at least 880 mg every 10-12 hours).

Update: Jan 2015

I now have a family physician who is interested in taking me on. Yay!!! At the clinic just across a few streets from my home, too. Yes, the same as the one in last year’s update. It’s an uphill walk to the clinic, but doable (with many rests and a cane). The new doctor and I are still in the get-to-know-me stage and he’s mostly just refilling prescriptions at this point. But we have spoken about getting me back re-diagnosed (documented) for ODSP (Ontario Disability) so I can re-apply. I applied for the Canadian Disability Tax credit through Thenba.ca, which got me exactly no where. I think maybe I might have gotten $150 or some ridiculously insulting amount. I do NOT recommend going for this supposed Disability Tax credit.

Update: Aug 2016

Finally approved for CPPD and ODSP as of this month. I make a mere $400 or so more than what a single woman makes on Ontario Works (welfare). I’m a lot more mobile than I was when I first wrote this post in 2012. Though, it is mostly because I have had no choice. I left my ex this past February (2016) and I have had to fend for myself, by myself since then. It’s just the kitties and I for now. But that’s ok. I’m out of a very negative relationship that became abusive after I could no longer work. It’s all good, I’m much happier now.